On January 16, 2016, after a six (6) week wait for the results of John’s genetic test for Huntington’s disease, John and I sat anxiously in a patient room at HDSA UC Davis Center of Excellence holding hands. We held our breath as Dr. Wheelock gave us the answer we had hoped for.
John was negative!!!!!It was the happiest day of our lives!
At that time, it was only the second time I ever saw John cry. I was so happy it was tears of joy and not sorrow.
To tell you the truth, hearing his CAG count was surreal, almost dreamlike. After committing to a relationship in 1979 with John, marrying him in 1980 knowing he was at risk for Huntington’s disease, and living 39 years at risk, the tension I felt in my chest subsided.
Our daughter Vanessa Garrett
John and our son, Keith.
John’s negative test freed Keith and Vanessa, from having to live a life at risk like their father.
We Can Never Lose HOPE…
May is Huntington’s Disease Awareness Month. #LetsTalkAboutHD Please consider making a donation to the nonprofit, Huntington’s Disease Society of America (HDSA) to help fund research, Centers of Excellence (HD clinics), local and online support groups, disability lawyer to help HD families with their disability claim and many FREE online programs/services to HD families across the U.S.
HD is an autosomal dominant trinucleotide repeat disorder that causes the progressive degeneration of the basal nuclei. This degeneration leads to clinical symptoms affecting voluntary movement, cognitive impairment, and psychiatric disorders. It’s rare, genetic and fatal and has all the symptoms of ALS, Parkinson’s and Alzheimer’s at the same time. There is NO CURE. Only 41,000 American’s have the disease and 200,000 live at risk and 16% of all cases are children with Juvenile HD.
Thank you Trey for all your advocacy work you do and have done for the HD community! #LetsTalkAboutHD
Trey was diagnosed 19 years ago and given 10-15 years to live. He feels that his work as a professional drummer has helped him fight the disease. He said, “I’m definitely beating the odds. And that’s a good thing. I want to be there for people to say, ‘You can do this. You can have an okay life!” Trey Gray Foundation
Trey played with Faith Hill on her climb to fame for seven years and then played with Jewel. He has been the drummer for the popular country duo, Brooks and Dunn for many years.
Kate Miner is from a Huntington’s disease (HD) family. She is an actress, musician, singer and advocate for HD. Her mother has the disease and her two (2) sisters are HD positive. Kate’s sister,Jenne Coler-Dark is on the Huntington’s Disease Society of America(HDSA) Board of Trustees. Kate and her Hollywood friends started the HDSA HD FREEZE fundraiser and this year will be its 8th year. Before the Pandemic, approximately $400,000.00+ was raised and the last two years it was virtual and raised approximately $200,000.00. Thank you Kate for the advocacy work you do for the Huntington’s disease community
May is HD Awareness Month. Huntington’s disease is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimer’s at the same time and there isNO CURE. 41,000 American’s have the disease & 200,000 live at risk.
Please consider donating to the nonprofit, HDSA, to help fight the disease by conducting research, funding HD clinics and HD support groups around the country, and many free online resources. Since there is NO CURE, HDSA provides services/resources to help HD families have the highest quality to their lives.
To celebrate Huntington’s Disease (HD) Awareness Month, Stanford Center of Excellence is hosting a Virtual Education Day on Saturday, May 7th from 8:30 a.m. to 12 noon. Dr. Sharon Sha, MD, MS, and her team at Stanford Center of Excellence in Stanford CA, is heightening awareness of the disease during HD Awareness Month. She and her colleagues will present current information on Huntington’s disease to the HD community everywhere. #LetsTalkAboutHD
John and I stood by his three (3) sisters, Lora, Marcia and Cindy in the slow decline caused by Huntington’s disease (HD). I describe the slow decline as losses; loss of the ability to drive, to dress yourself, to put your makeup on, to work, to pay your bills, feed yourself, talk. Because of these losses, one is unable to manage day to day life and perform activities of daily living, which compromises their independence. (Activities of daily living (ADLs) are basic actions that a normally functioning person performs every day. The six standard ADLs are bathing, dressing, toileting, transferring (moving to and from a bed or a chair), eating, and continence.)
As these losses occur in a person with HD, which can be over a 20 years, caregivers as well as those declining, carry grief in their hearts. I did, especially with Marcia as I managed her care. Marcia’s decline was difficult for me because in all the years I had known her, she took pride in her appearance and was the most stylishly dressed woman I knew. She was a professional at AT&T in San Francisco for 17 years, so when she had to switch to pants with an elastic waist, she couldn’t manipulate a zipper, and had to replace her fashionable shoes with tennis shoes with velcro, my heart became heavy.
This year, the nonprofit, Huntington’s Disease Society of America, will be launching two new initiatives during Huntington’s Disease Awareness Month. The 31 Days, 31 Stories video campaign will release a different HD story each day across HDSA’s social media channels. HDSA will also share the first-ever Athletes vs. HD sports memorabilia auction which will open on May 1st and close on May 15th (International HD Awareness Day).
Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
There is NO CURE for Huntington’s disease or Juvenile Huntington’s disease.
The nonprofit my family supports, Huntington’s Disease Society of America (HDSA) is just one of the organizations making changes in their fundraising activities. Most HDSA Chapters/Affiliates, there are 100 Team Hope Walks across the U.S., are changing their Team Hope Walk, HDSA’s grassroots fundraiser, to a virtual event as is their Annual Convention on June 4-7, 2020. Sign up for Virtual HDSA Annual Convention; it’s FREE:
Please consider HDSA when making a donation to a worthy cause. Huntington’s disease is a rare, fatal, genetic brain disorder that has symptoms like ALS, Parkinson’s and Alzheimers. 10% of all Huntington’s disease (HD) cases are children with Juvenile HD. There are 41,000 symptomatic Americans and approximately 200,000 that are at risk for HD. There is NO CURE. HDSAwebsite
Sixteen (16) years ago, Trey Gray was diagnosed with Huntington’s Disease (HD) and given 10-15 years to live. He feels that his work as a professional drummer has helped him fight the disease. Visit http://hdsa.org for information on HD.
“I’m definitely beating the odds. And that’s a good thing,” he shares. “I want to be there for people to say, ‘You can do this. You can have an okay life!'”
There are hero’s in our world and Trey is one that the Huntington’s disease (HD) community embraces with love. To watch the Trey’s video, “Beating the Odds of Huntington’s Disease”, visit: Trey’s video
Bio on Trey: Trey Gray was born in Indianapolis, IN, USA as George Lewis Gray, III to his father, George and mother, Cindy. His passion for drums started at the early age of 6 and it was then that he knew his destiny. Gray had his share of rough starts yet always stayed focus on what he loved the most.
My name is Therese Crutcher-Marin and I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. Therese’s Author Website
This is my HD story:Lora, Marcia and Cindy Marin, my sisters-in-law, have died from HD complications, struggling with HD for 15-17 years. These wonderful women, who were my dear friends, enriched my life by their positive attitudes, kindness and by their strength and resilience in fighting HD. I am blessed to have known the three women and they inspired me to write and publish the nonfiction, Watching Their Dance. I was determined to tell the Marin story.
My husband’s mother, Phyllis Iva (Cahoon) Marin was placed in Napa State (Mental) Hospital, in the late 1940’s, because of violent outbursts, hallucinations and her inability to take care of her small children. The medical folks were unable to diagnose her and my father-in-law never heard the Huntington’s Chorea until he saw it on her death certificate. She died in 1968, at age 48, by strangulation as she had to be tied down because the chorea was so bad.
“HUNTINGTON’S DISEASE is the CRUELEST Disease on the Planet”
We Can Never Lose HOPE…………. #LetsTalkAboutHD
To learn more about Huntington’s disease and HD resources, visit: http://hdsa.org